Hello all thanks for welcoming me into the community. I didn’t realise that there could me so many of us in one place! With my limited knowledge I’ve found it easy to find my way around, well done techies. I was shocked how quickly I have been able to meet other patients of my age with CLL; we appear to be quite thin on the ground. Just exchanging information about symptoms we share that the haemo’s seem to dismiss within our age group, has taken away some of the fear that doubt creates. Sharing in the broader experiences of the community has already cleared much of the fog that still lingers following my diagnosis. I now know I do have a place where I can share the ups and downs caused by our disease.
It’s taken a while but I think I’ve managed to come to terms with the disease, what was holding me back was partly my own denial, combined with the complex nature of what diagnosis really means. Having to learn a new language just to interoperate what CLL is, has taken the longest. At first you can’t see the wood for the trees. There’s so much conflicting information out there and it’s written in different medical languages, so each time you visit, you come away more confused and afraid. Perhaps learning to cope with “watch and wait” is one of the hardest! Every thing you think you understand about cancer is turned on its head by this approach. To have to let the disease develop within you, whilst it gets stronger and you get weaker, must be one of the greatest adjustments to perceived convention that we make. Thankfully we ought to get respite for a good while after the time treatment comes. But it’s a bit of a double edged sword really; if you want treatment you can’t have it yet, and when you don’t you have little choice. At least we have time to be involved in the decision as to what therapy will best suit us.
Cancer has opened my eyes to the affects on the patient, their loved ones, friends and lives. Nobody wants to be a member of this club, but having had no choice, I am glad to have found this address. I look forward for the opportunity of sharing highs and lows with many new friends within the wider community. Please let me know what has helped you adjust to the new shape of your lives. Take care, an optimistic newbie,
BEAR
